Category Archives: Accessibility and Inclusion

Reflections on Deafhood and A11yhood

During my sabbatical, one of my goals has been to start learning ASL. As I mentioned in a prior post, this effort was briefly accelerated by the loss of my voice in November, but I have continued to take ASL classes well past that experience and am now a student in ASL 103. In addition to the language, these classes have introduced aspects of d/Deaf culture I was not previously aware of. One concept in particular, Deafhood, and its parallels to modern disability justice and culture, really resonates with me.

Deafhood is a reaction to the historical trauma and oppression of d/Deaf people and community that became particularly acute during the mid to late 1800s when Oralism began to forcibly replace sign language education around the world, something that would continue for about a century (Ladd, 2003; Murray & Greenwald, 2010). Hereditary deafness combined with acceptance, culture, and language, unimpeded, had the potential to nurture strong, integrated, and positive communities such as found in Martha’s Vineyard (Groce, 1985). Yet the Oralist movement tore this apart.

In this same time period, the “science” of eugenics came to the fore in America, fed both by prejudice and advances in scientific understanding, led by scientists such as Mendel and Darwin (Nielsen, 2012). These beliefs were used as a basis for excluding immigrants (and fed into racial bias and stereotyping) (Nielsen, 2012), including d/Deaf immigrants, but their impact on Americans with disabilities was even more profound. Forced sterilization, institutionalization, experimentation and murder became “acceptable” practices imposed on people with disabilities (Nielsen, 2012; Sheffer, 2018).

For d/Deaf people and communities, a twist of fate may have provided some protection from the worst of the eugenics movement: Alexander Graham Bell, whose mother and wife were deaf, was an influential participant in the eugenics movement. Although an advocate for Oralism and eugenics both, perhaps because of his personal relationships, he argued against “negative” eugenics (meaning forced sterilization, institutionalization and worse) for d/Deaf people, and instead developed a policy centered on “positive” eugenics — breaking the genetic line, so to speak, by discouraging intermarriage (Greenwald, 2009). Although he may have provided some protection, Deafness was certainly still mentioned in forced sterilization laws across the country, and eugenics of any sort, combined with Oralism, extremely harmful to d/Deaf people and community.

Intellectual capability, and the ability to support oneself financially, were both reasons given for the eugenics movement — essentially that people with disabilities were somehow harming society/non-disabled people by being less intelligent, and independent, than their counterparts (all false assumptions). Ironically, d/Deaf people in Martha’s Vineyard had above average income (Groce, 1985, p. 50), something Oralism (with its negative impacts on education), and lack of community, could only hurt.  Although Oralism was no longer the only option by the time Paddy Ladd began his 2003 ethnography, “Understanding deaf culture”, the legacy of this history of colonization and oppression remains today. Further, one might argue that it is now codified in the medicalization of “treatment” for deafness, i.e. the focus of medical professionals counseling families with deaf children to use cochlear implants, a technology literally designed to improve the effectiveness of oralism, over ASL (Kite, 2020). 

Ladd’s ethnography, in which he coins the term Deafhood, is a theory of culture grounded in the Deaf experiences of identity, language, and society. Ladd, and by extension Ladd’s definition of Deafhood, recognizes that identity is a process. As described in the definition on deafhood.org, “Deafhood as a journey that a Deaf person undertakes to discover his, her or their identity and purpose in life.” This journey is not an isolated, individual experience but rather a reframing, and recreation of a rich, linguistic, humanistic culture which is also engaged in a radical act of self definition. 

I see many parallels between Deafhood and other cultures that have arisen from the ashes of erasure and oppression. As the comedian Hannah Gadsby remarks in her show Nanette, in describing her experience of oppression as a child, 

When you soak a child in shame, they cannot develop the neurological pathways that carry thought… you know, carry thoughts of self-worth. They can’t do that. Self-hatred is only ever a seed planted from outside in. But when you do that to a child, it becomes a weed so thick, and it grows so fast, the child doesn’t know any different. It becomes… as natural as gravity.”

Similarly, questions about self worth are deeply influenced by our cultural and individual historical treatment of disability, particularly in Western culture during the industrial revolution and beyond. Disability is not only a minority identity that through eugenics and other means was hidden and erased, but even worse, disability was the justification for erasing, enslaving, and institutionalizing people from many other minoritized identities (Nielsen, 2012). Even the Deaf community tried to distance it from disability due to disability’s stigma (Nielsen, 2012, p. 136). The legacy of these attitudes and policies remains today, with the prison population, for example, having a much higher rate of disability than average, and disability feeding into the school to prison pipeline (Mahon-Reynolds & Parker, 2016). 

Although it lacks a literal common language, or a name, I would argue that similar to Deafhood, there is a movement toward a disability cultural identity connected to the disability justice movement, what I chose to call A11yhood in the title to this post. As Neil Marcus writes in his poem, “Disabled Country”, “If there was a country called disabled / I would be from there / … / In my life’s journey / I am making myself / At home in my country” This journey is based in shared experience, as highlighted in the movie Crip Camp. It is also political in nature — one might argue that modern disability culture is rooted in activism, which began at least as early as 1935 (Nielsen, 2012, p. 133) and continues today.  The rise of the independent living movement created cultural centers for people with disabilities in many cities, further strengthening this change. Today, disability culture plays out on social media, with strong voices such as Alice Wong (Wong, 2020) and Imani Barbarin, as well as collectives such as Sins Invalid (Berne, 2018) leading the way. 

Similar to Deafhood, I have observed the journey implicit in a modern disability justice identity in my own journey into acceptance and power as a disabled woman; and in the transformation a disability identity has provided to the multiple people I have offered it to as an explanatory frame for their disability experience. I have seen the power of this, particularly in settings that integrate community and support, as well as activism and advocacy. Each of us must learn about our identity, and purpose, and power, as disabled people. We must learn the vocabulary of community, of oppression and of activism. We must learn A11yhood.

References

Ladd, P. (2003). Understanding deaf culture. In Understanding Deaf Culture. Multilingual Matters.

Murray, J. J., & Greenwald, B. H. (2010) How the Past Informs the Present: Intersections of Deaf History with Deaf Studies. Deaf Studies Today! (Volume 4)

Nielsen, K. E. (2012). A disability history of the United States (Vol. 2). Beacon Press.

Sheffer, E. (2018). Asperger’s children: The origins of autism in Nazi Vienna. WW Norton & Company.

Greenwald, B. H. (2009). The real “toll” of AG Bell: Lessons about eugenics. Sign Language Studies, 9(3), 258-265.

Groce, N. E. (1985). Everyone here spoke sign language: Hereditary deafness on Martha’s Vineyard. Harvard University Press.

Kite, B. J. (2020). How the medical professionals impact ASL and English families’ language planning policy. Psychology in the Schools, 57(3), 402-417.

Mahon-Reynolds, C., & Parker, L. (2016). The overrepresentation of students of color with learning disabilities. DisCrit—Disability studies and critical race theory in education, 145.

Nicole Newnham and James LeBrecht. Prod. (2020) Crip Camp: A Disability Revolution. Dir. by Good Gravy Films and Higher Ground Productions,. 108 mins. (https://cripcamp.com)

Wong, A. (Ed.). (2020). Disability visibility: First-person stories from the twenty-first century. Vintage.

Berne, P., Morales, A. L., Langstaff, D., & Invalid, S. (2018). Ten principles of disability justice. WSQ: Women’s Studies Quarterly, 46(1), 227-230.

CHI Trip Report: Visualization, Fabrication and Accessibility

I regularly take notes when I attend a conference, and especially when attending for the first time after several years I have the sense that there is so much to absorb and enjoy! I have been much less consistent about doing this in a public way, but this year I’m particularly trying to do so for the sake of the many people who can’t attend in person or at all; as well as all of us who can only go to one session when so many are worth attending!

It would be a very long blog post if I summarized all of the great accessibility work, as that is an increasingly large subset of CHI work. I’ll focus on things relevant to areas that are of growing importance to me — visualization and fabrication, along with a brief section on some accessibility highlights. To learn more about the experience of attending remotely versus in person, see my other trip report.

Visualization Sessions

I attempted to attend a mix of paper sessions and other conversations around data and accessibility. In the SIG on “Data as Human Centered Design Material” I had a number of interesting conversations. I spoke with Alex Bowyer who looks at personal data use. One important use of data he mentioned to “create evidence.” Interesting to think about “data for activism” in this context. Another interesting conversation from that SIG centered on how to summarize complex data for retrospective interviews, and accessibility concerns here. Another challenge is how to design apps that use data effectively in the field/live use, again accessibility concerns arise. Further, how do you properly generalize machine learning and visualizations? How do you improve start up, and scale well? How do you support customization of both visualizations and machine learning?

The session on accessible visualization was my next dip into visualization. The first talk talked about audio data narratives for BLV users. Their study highlighted how audio narrative could help to highlight features that might be hard to hear otherwise through strategies like foreshadowing breaking up the basic sonification. The second talk was on 1dof haptic techniques for graph understanding, for BLV users. The authors explored the value of static 3D printed and haptic moveable cues for helping with graph understanding tasks such as comparison. An interesting technique, though sonification also held its own in their data. An interesting question to me is whether a dynamic chart with a piece of flexible material over it (to “smooth” the line) would be better than the slider in terms of the experience — similar to the 3D printed chart, but dynamic. Next, a retroactive fix for a range of charts inaccessible to screen reader users was presented in VoxLens. The authors highlighted the state of online visualization today (which is truly terrible) and then provide a real solution to this problem. The solution combines sonification, high level summaries, and NLP based queries, all automatically supported given simple configuration in JavaScript about axes and a pointer to the chart object. It would be interesting to see them take advantage of ideas from a related paper on proactive visualization exploration support agents in this work. The next presentation focused on improving color patterns to address color vision deficiency. The final paper in the session focused on infographic accessibility.

Some additional papers also looked at accessibility. Joyner et al looked at visualization accessibility in the wild. They analyzed visualizations and surveyed and interviewed practitioners and found the vast majority were accessibility novices; 30-40% did not think it was their job and 71% could think of reasons to eliminate accessibility features even though the acknowledged accessibility was important. They also highlight some difficulties in creating accessible visualizations, such uncertainty in what and how to do (such as how to deal with filters), as well as lack of organization support and lack of tool support. “ComputableViz” support composition such as union, difference, and intersection. They discuss the potential for this approach to make a visualization more cognitively accessible. The intermediate representation used in this work is a relational database derived from the vega-lite specification — I think this has great potential for other accessibility applications including better description; change monitoring; end-user authoring of sonifications; and more. Finally, MyMove is a new method for collecting activity data from older adults.

Two studies made use of simulation. I call them out because of their thoughtfulness in doing so — simulation can have negative impacts and is usually not an appropriate substitute for working with people with disabilities. One study modified visualizations to simulate color deficiency on published visualizations and then crowdsourced large scale data about their accessibility. I think this is a reasonable application of that technique for two reasons: (1) the benefits of data at this scale are high and (2) the specific disability and task structure are unlikely to create bias either in the study data or in the participants (i.e. negatively influence their opinion of disability). Another good example of a study which used hearing people instead of DHH people was ProtoSound. This allowed them to collect data about the accuracy of non-speech sound recognition by their system. However they made use of DHH input throughout the design process.

I also want to highlight research that I though had interesting applications here that were not accessibility papers: “Data Every Day” was interesting because of its emphasis on personalized data tracking, including customization, data entry and authorship, both things that are under-explored in accessible visualization research. “Cicero” allows specification of transformations to visualizations declaratively — thus making visualization changes computationally available which creates many interesting opportunities. “CrossData” is an NLP interface to a data table which provides a fascinating model for authorship and exploration of data. Although the authors didn’t mention this, I think this could be a great way to author alt text for charts. “Diff In The Loop” highlights the ways that data changes during data science programming tasks as code changes. The authors explored a variety of ways to represent this– all visual– but highlights why change understanding is so important. It also raises issues such as what time scale to show changes over which would be relevant to any responsive visualization interaction task as well. Fan et al’s work (VADER lab) on addressing deception made me wonder whether accessible charts (and which chart accessibility techniques) can perform well on visual literacy tests. Cambo & Gergle’sq paper on model positionality and computational reflexivity has immediate implications for disability, and particularly highlights the importance of not only whether disability data is even collected but also things like who annotates such data. Finally, Metaphorical Visualizations translates graph data into arbitrary metaphorical spaces. Although the authors focus on visual metaphors, this could be valuable for audio as well.

There were several tangible visualizations, again relevant to but not targeting accessibility. Shape changing displays for sound zones; STRAIDE used interactive objects mounted on strings that could be actuated to move vertically in space over a large (apparently 4ft or so) range of heights to support rapid prototyping of moveable physical displays. Sauvé et al studied how people physicalize and label data. They explored the relation between type and location of labels, which may have implications for intuitive design of nonvisual physical charts. Making Data Tangible is an important survey paper that explores cross-disciplinary considerations in data physicalization.

Finally, a look at applications, and here we see a mix including some accessibility focused papers. CollabAlly, can represent collaboration activities within a document, and provided an interesting synergy with the earlier talk this same week, Co11ab that provided realtime audio signals about collaborators. This dive into what makes tables inaccessible suggests concrete viable solutions (and check out some other interesting work by this team). Graphiti demonstrated a thoughtfully designed approach to interacting with graph data extracted dynamically with computer vision, a complex and intricate exploratory visualization task. Xiaojun Ma and her students created a system for communicating about data analysis by automatically producing presentation slides from a Jupyter notebook. Working jointly and iteratively with automation and a machine, from a source notebook, could make it easier to make those slides accessible. ImageExplorer vocalizes description of an image with auto-generated captions to help BLV people identify errors. I wonder what one might need to change in this approach for auto-generated (or just badly written) chart captions. Two important learnings from ImageExplorer were the value hierarchical, spatial nature of navigation supported; and the need to support both text and spatial navigation. Cocomix was focused making on comics, not visualizations, accessible to BLV people, but I think the many innovations in this paper have lots of applications for change description and dashboard description. Saha et al discuss visualizing urban accessibility, exploring how different types of secondary information and visualization needs vary for different stakeholders.

Fabrication Work

The vast majority of fabrication work this year did not directly engage with accessibility. That said, I saw a lot of potential for future work in this space.

I first attended the workshop, Reimagining Systems for Learning Hands-on Creative and Maker Skills. We discussed a wide variety of topics around who makes, how people make, and what we might want to contribute to and learn about those experiences as a community. We talked about who is included in making as well. Some provocative discussions happened around whether digital tools or physical tools are a better starting place for learning; how we engage with diverse communities without “colonizing” those spaces; and whether we should “claim” diverse crafts as making or not; The ways in which new technologies can inhibit learning (everyone makes a keychain tag); and the need to educate not only students but educators. Another interesting discussion happened around how time plays out in making and adds challenges when things take time to print, grow, etc etc. Another topic that came up was the digital divide in access to maker spaces, i.e. what may be available in rural communities. Another was tutorial accessibility and whether/how to improve that. Some of the interesting people I learned more about include: Jun Gong (formerly at MIT, now at Apple; does everything from interaction technique design to meta materials); Erin Higgins (introducing youth in Baltimore City to making); and Fraser Anderson (whose work includes instrumenting maker spaces to better understand maker activities). I also want to highlight some students I already knew about here at UW 🙂 including my own student Aashaka Desai (working on machine embroidered tactile graphics) and Daniel Campos Zamora who is interested in the intersection of fabrication and access (ask him about his mobile 3D printer :). 

The first fabrication session I made it to was a panel that placed fabrication up against VR/AR/Haptics. Hrvoje Benko and Michael Nebeling were in “camp AR/VR” and listed challenges such as interaction devices; adaptive UIs and so on. Valkyrie Savage, “camp fabrication” talked of interaction and sensing (as well as the sensory systems); Huaishu Peng & Patrick Baudisch talked about fabrication + interaction; small artifacts; and AR/VR. The wide-ranging discussion mentioned machine reliability; accessibility and 3D printing as a public utility; using AR/VR to bridge the gap between a physical object that almost fills a need and reality with AR/VR (repurposing); and/or business (i.e. Amazon vs Fab). I will focus on what I see as accessibility challenges in the arguments made: Can have anything delivered to our door in 2 hrs? I would claim that our process today works for mass manufacturing but is not customizable to people with disabilities. Next, a potential flaw of AR/VR is its dependence on electricity — if we are to make meaningful, useful objects, physicality is essential for people who either cannot count on having power, or who depend upon a solution being available all the time. Another concern is bridging from accessible consumption to accessible, inclusive authoring tools. As Valkyrie Savage argued, physicality addresses multiple types of inclusion better than VR/AR. Lastly, materials were discussed briefly, though not from an accessibility perspective (though material properties are critical to successful access support in my mind).

Moving on to individual papers, I was excited to see multiple people talking about the importance of programming language support for parametric modeling and physical computing (an interest of my own). For example, Tom Veuskensideas about combining WYSWIG and code for parametric modeling look highly intuitive and fun to use. Valkyrie Savage talked about the importance of this for novice learners and lays the idea of a Jupyter notebook style approach to physical computing design. Tom Vueskens et al. provide a beautiful summary of the variety of code based approaches to support re-use in the literature. Another interesting and I think related set of conversations happened around how you understand making activities. An example is Colin Yeung’s work on tabletop time machines. The concept of being able to go back and forward in time, ideally with linkages to physical actions, project state, and digital file state, is really interesting from an accessibility perspective. Relatedly, Rasch, Kosch and Feger discuss how AR can support learning of physical computing. Finally, Clara Rigaud discussed the potential harms of automatic documentation.

In the domain of modeling tools, accessibility did not come up much. While many papers mentioned custom modeling tools, none of the talks mentioned accessibility for authors/modelers nor did they report on studies with disabled people. The most obvious challenge here is BLV accessibility; but to the extent that generative design is simplifying the modeling experience and computationally controllable, I think there are some very easy ways to improve on this situation. I was actually most intrigued by a non-fabrication paper’s relevance to both fabrication and accessibility: HAExplorer which the fabrication person in me sees as an interesting model for understanding the mechanics of motion of any mechanics, not just biomechanics. In addition, visualizations of mechanics raise the possibility of accessible visualizations of mechanics.

The haptics session had multiple potential accessibility applications. FlexHaptics provides a general method and design tool for designing haptic effects using fabrication, including in interactive controllers; while ShapeHaptics supports design of passive haptic using a combination of springs and sliders which together can control the force profile of a 1D slider. An interesting accessibility side effect of this approach is to modify existing objects by adding both physical and audio effects at key moments, such as when pliers close. In some configurations, the system can also be easily swappable, thus allowing for manual selection experiences based on context. ReCompFig supports dynamic changes to kinematics using a combination of rods and cables (which can be loosened or tightened by a motor). They create effects like a joystick, pixelated display with varying stiffness; and a range of haptic effects such as holding a glass of liquid, or stiff bar. 3D printed soft sensors uses a flexible lattice structure to support resistive soft sensor design.

Interesting materials included Embr, which combines hand embroidery with thermochromic ink, which characterizes 12 of the most popular embroidery stitches for this purpose and supports simulation and design. The results are beautiful to look at and I wonder if there is potential for creating shared multi-ability experiences, such as combining capacitive touch-based audio output with simultaneous visual feedback. I loved multiple aspects of FabricINK because of its sustainable approach (recycling e-ink) as well as the way it opens the door to fine grained displays on many surfaces. Luo it al present pneumatic actuators combined with machine knitting. ElectroPop uses static charge combined with cut mylar sheets to create 3D shapes (it would be interesting to know how well these would hold up to exploratory touch). SlabForge supports design (for manual production) of slab based ceramics. Finally, the Logic Bonbon provides a metamaterial edible interaction platform. Nice to see the range of materials+X being presented, and lots of interesting potential applications of these low-level capabilities.

Another grouping of papers explored capabilities that could increase the accessibility of objects with additional information. M. Doga Dogan et al created InfraredTags, which allow embedding of infrared QR codes in 3D printed objects. Although not a focus of the paper, this has accessibility value (for example an audio description could be embedded). This does require an IR camera. Pourjafarian et al present Print-A-Sketch, which supports accurate printing on arbitrary surfaces, including reproductions of small icons as well as scanning and line drawing. Although not a focus of the work, it would be very interesting to think about how this could be used to create tactile and interactive graphics, or to annotate existing documents and objects for increased accessibility. It would be interesting to think about inks with other kinds of properties than conductive (such as raised inks) as well.

Although my theme is accessibility, disability justice is an intersectional issue that must consider other aspects of design. In that vein, I want to highlight two lovely examples of sustainable design. ReClaym, which creates clay objects from personal composting, and Light In Light Out which harvests and manipulates natural light computationally.

There were a few papers that focused on accessibility, all in the applications space. Roman combines object augmentation with a robotic manipulator to support a wide range of manipulation tasks not easily manipulable by robotic arms. The robot is augmented with a motorized magnetic gripper, while the target object is augmented with a device that can translate rotary motion into an appropriate motion and force profile. Mobiot is a system that supports the creation of custom print and assembly instructions for IoT mobile actuators by leveraging recognition of objects in a known model database combined with demonstration. My student Megan Hofmann presented Maptimizer, a system which creates optimal 3D printed maps was very synergistic with 3D printed street crossings for mobility training. TronicBoards, which support electronic design. FoolProofJoints improves ease of assembly, which although not tested with disabled participants seems to me to have direct accessibility benefits. One final application was material adaptations for supporting accessible drone piloting. This involved both software adaptation, physical control adaptation and posture adaptations. The authors supported multiple disabilities (and multiply disabled people); and open sourced their toolkit.

Other Disability/Accessibility Highlights

Dreaming Disability Justice Workshop: This workshop discussed academic inclusion and the importance of research at the intersection of race and disability that is strongly influenced by both perspectives in conjunction (as opposed to a “this and that” model). Also just not erasing that history (e.g. see these examples of Black, disabled, powerful women). Some of the interesting people I learned more about include:  Cella Sum (politics of care in disability spaces); Frank Elavsky (accessible visualization); Harsha Bala (an anthropologist); Erika Sam (Design Researcher at Microsoft) and Tamana Motahar (A PhD student studying personal informatics and Social Computing for empowering marginalized populations worldwide).

On Tuesday morning I attended Accessibility and Aging. The first talk explored the experience of older adults sharing the work of financial management. Joint accounts & power of attorney are both problematic mechanisms. Banking assistance needs fall along a spectrum these are two blunt for. These concerns seem common to many domains (e.g. health portals; social media accounts; etc). The second talk was on The third was a paper I collaborated on, access needs research design was presented by Kelly Mack. How can we empower researchers to anticipate the broad range of disabilities they might encounter? Anticipate (make things accessible from the beginning) and Adjust as needed. End by Reflecting on things like power dynamics and access conflicts. Next, Christina Harrington‘s award winning paper addressed communication breakdowns in health information seeking using voice for black older adults. Her paper addressed critical concerns such as what dialects are supported by voice systems.

In reviewing other accessibility-related talks, I want to highlight the importance of end-user and multi-stakeholder authoring of interaction and experiences. Dai et al discussed relational maintenance in AAC conversation between users and caregivers. Seita et al show how DHH and speaking people can effectively collaborate when using a visual collaboration system like Miro. Ang et al discuss how video conferencing systems can better support the combination of speaking / signing / interpreting in mixed ASL/spoken language video conferencing calls. One concern — the difficulty of dynamically adjusting communication — reminded me of challenges I’ve experienced with online conferencing as well. Another mixed stakeholder case is Waycott et al’s study staff’s role in supporting VR experiences for elders are positive. A unique case of multi-stakeholder interaction is Choi’s analysis of disabled video blogger interaction with content curation algorithms and how algorithms could better support identity negotiation and audience selection.

I also want to highlight some interaction design work. I loved the WoZ study with ASL control of voice assistants by Glasser et al. It got right to the heart of an important unsolved problem, and in the process shed light on challenges we must solve for ASL as an input language for all sorts of automated contexts. Zhao et al described user-defined above-shoulder gesturing for motor-impaired interaction design, highlighting the importance of end user control over the interaction language for things like social acceptability and comfort. Nomon is an innovative approach to single switch input. This might be amenable to smooth saccade tracking as well.

To summarize an inspiring event. I was glad to be able to review it so thoroughly, thanks to all the online talks which I watched asynchronously.

A month of new Abelist Experiences

I’ve had many disabilities over the years since I first identified as disabled during graduate school due to the inaccessibilities I experienced as I was navigating a bad repetitive strain injury. But this last month is the first time I’ve acquired a new disability rapidly, without any significant illness impacting my energy or cognition, and with my eyes wide open regarding disability rights, activism, community and so on. I have had a very compressed, and diverse experience of ableist and discriminatory responses to my disability as a result, along with some very positive experiences.

What happened? I lost my voice. The details of why and how are besides the point, but I slowed speaking over about 10 days and then stopped entirely for the month of November, starting up again very slowly in December, though I can only tolerate a little speaking, and mostly use it at home. Luckily I and my youngest son both started learning ASL in September for fun. Given my RSI I decided it (combined with writing on a small portable whiteboard) was the best option and have rapidly increased my vocabulary. ASL is currently my primary mode of communication.

To reiterate: I’m not in pain, tired, unable to concentrate, unable to stay awake, and my ability to use a computer/do my job is not affected, unlike with other disabilities I have. I’m not worried about my future, I know my rights, and am generally in a position of power. UW gave me access to sign language interpretation within a less than a week after I stopped speaking, despite my rudimentary knowledge of ASL, and I’ve had some major and exciting breakthroughs in my communication ability thanks to that. I have multiple students and colleagues who have stepped up to help interpret, and even tutor me, in ASL. I have the financial means to pay for needs that are not being met, such as supplemental interpretation when no one is available through UW. As a result, overall, I’ve had a lot of success in managing this experience. Yet, here are some of the barriers I’ve encountered.

Assuming one disability implies another: When asking for ASL interpretation, I’ve been told I needed an audiology evaluation even after clearly stating I had merely lost my voice. This is also a form of unnecessary gatekeeping, if enforced (it wasn’t).

Assuming not being able to speak means not being able to work: I had multiple people (including at least one in a position of power over me) suggest I consider going on leave, despite my clearly stated plans to use ASL for communication. To me, this comes across as ableist in assuming that my loss of voice implies an inability to work.

Shaming and gatekeeping for not knowing ASL well enough As mentioned above, I started learning ASL in September. My grasp of it was rudimentary when this started (I’ve learned quickly since but am still a beginner!). When I tried to set up IP relay so that I could make phone calls, I had to verify my address over zoom. The person I met refused to slow their signing down and ended the call abruptly when I explained I was new to ASL.

Direct Discrimination: When I tried to make my first IP relay call, after finding another way to verify my address, the company I was calling hung up on me. I tried three times, asking the relay operator to explain the situation in different ways. They hung up every time (and lost my business in the process!).

Ableist Jokes: I’m basically good humored about the whole experience, but I find jokes about “turning me off” (by not knowing ASL/turning off IM) and preferring me “silent” to be offensive and ableist. And with precisely those same people it can be hard to communicate about why.

Expecting accommodation to come entirely from me: I’ve been frustrated by multiple one-way conversations in which someone tells me something but does not account for the fact that voice travels differently than written communication or communication through an interpreter.

Disbelieving doctor: Apparently someone who has lost their voice should look upset, sound like they’ve talked much more than their voice can handle, and definitely not use ASL or other means to communicate. Also if they cannot speak they are probably also having trouble understanding simple concepts. Or at least that’s the message I got from my voice therapist who thought they needed to speak to me sloowwlly and loouudly, called my portable whiteboard a “crutch” and did not take my expressed needs and goals seriously.

In essence, this is the first disability experience I’ve had that is defined entirely by the numerous barriers put up by others. I’m not particularly surprised by the individual things I’ve experienced — many I’ve experienced before, and all are in line with disability studies theory about interpersonal and structural bias and discrimination.

I will admit to being surprised by the sheer amount of discrimination I’ve encountered in a single month. I suspect this is mostly about being in a new situation. But I’d argue that is exactly when compassion and support are most needed!

There are many take aways here, but since I write for a mostly academic audience, I want to highlight three in particular: (1) If you experience disability discrimination, remember this should not become normalized and is not acceptable. Reach out if you need a hand, or an ear. I’m always available. (2) It is hard work to overcome these sorts of barriers. Remember all the extra work your peers, mentors, and mentees who experience disability have to do. (3) This is slow work. It takes time to document things, find doctors, learn to use new types of accommodation. Give folks grace, compassion, and understanding as needed.

Reviews Considered Harmful?

… my position just is that such discussions [meaning models of disability] are intellectually intriguing but seem to be of limited value for solving front-line real-world practical problems

Anonymous Reviewer

Somehow, over the past few years, I seem to have grown a thinner skin around reviews. Or perhaps I am just doing work that evokes more problematic responses. Or maybe I am learning to recognize harms that previously passed me by. In any case, I think it is time for us as a community to start a conversation about the darker side of reviewing.

What do I mean by this? Of course it is difficult to get reviews that critique ones work, sometimes legitimately and sometimes because they miss something in a paper, or are written on a bad day. Even so, peer reviews, in general, are valuable and important, and authors know that. I’ve always told myself (and my students) to think of a paper as a user interface — if the user misunderstands things, the question is not “why did the user make so many mistakes” it is “why did my interface not guide the user properly toward the right approach and away from the wrong one”. Analogously, a review is an (imperfect) reflection of the flaws in either one’s research or writing — a perfect project, and a perfect writeup, together should presumably result in perfect reviews. This of course is very idealistic, but at least close to the general goal that I think we all share.

Being a reviewer has always been a space in which we must take care to exercise power compassionately, helping the writer (often a new researcher, often a student) to learn and grow from a process that with a fair amount of randomness decides “what counts” and sets careers in motion (or slows them down). However, I’ve recently observed that the power of reviewers goes beyond mentorship and gatekeeping. Ideology, bias, and politics have become visible to me. Here are some examples of truly harmful errors which have the potential to compound other barriers to participation in our community.

Increased scrutiny for certain types of work. Papers that raise questions about the academic process (and its biases) seem to face a degree of scrutiny and nitpicking that makes it much harder to publish them. I’ve spoken with multiple others who have found this same phenomenon when doing this sort of work. This matters because these forms of inquiry are already de-valued in comparison to other forms of research, and the additional difficulties in publishing them only make this worse. It should come as no surprise that the researchers who take the time to do this sort of work are also often members of groups that are under represented in the academy.

Critique because of a political difference of opinion. I have always been taught never to escalate a disagreement with reviewing outside of the rebuttal process, and throughout almost my entire career I have adhered to that. However, a reviewer objected to the term “marginalized”, and accused us of engaging in grievance studies, stating

One nonsensical concept the authors introduced was the use of ‘higher marginalized status’ (whatever that may mean - one presumes the authors subscribe to the strange psuedolegal theory debunked e.g. by Douglas Murray in the ‘Madness of Crowds’)

I found myself requesting help with receiving a fair review from the program chairs of the conference I had submitted to. Similarly, a reviewer of a grant proposal that included improved tools for Blind and Low Vision programmers stated:

I agree we need to include vision impaired population in the design loop, but it is not necessary for them to do the programming to implement their ideas.... It is not really necessary for those vision impaired to perform programming.

I accepted the rejection of my proposal, but contacted the relevant program officer to alert them to my concerns with this reviewer’s beliefs about who can program.

Accusations of conflict of interest as a result of deep community engagement. I used deep, community engaged work as one of several data collection strategies in a paper (other communities were also providing data). In addition to volunteering in the community, I ultimately invited a leader in the community to co-author the submitted paper. All of this was disclosed, but a reviewer felt that as a result the contribution of the paper was limited because of

...prior relationship with [the community] compromises the interview data drawn from participants in [the community].

Sometimes the harm is not having a reviewer at all. Further compounding all of this is the difficulties that editors have in finding reviewers. The last time I was an associate chair at a conference, which was prior to the upheaval COVID-19 has caused in all of our lives, as a senior member of our community with a large network to draw upon, I had to ask six people to review a paper for every one who said yes. More recently, I submitted a journal paper only to discover months later that it still was not even in review because the editor had asked over 20 people and only had one person agree.

How can we do better? I don’t claim to have the answers here, but I think it is time to start experimenting, or at least talking more about what to do. Here are some ideas I’ve been thinking about. Please comment on this post and add your own!

Process Improvements: I think we have multiple problems that require process improvements. One is reviewer training. Also, a known process for redressing (or addressing) problematic reviews could be of value.

Open Reviewing: One way to improve review quality is oversight. However this takes even more time. Open reviewing might be another way to impact what people say without as much extra work. In addition, it could reduce the burden on authors faced with problematic reviews by allowing others to call them out and respond to them.

Limited Submission: Volume of submissions compounds all the others issues — because we have more papers to review than reviewer capacity, we draw reviewers from further afield, or earlier in their careers, than ever before. One way to address this limit the number of papers reviewed by a single author, or require some reviewing service in return. This may be hard to enforce in papers with many authors, some of whom may not even be from the same field.

Fewer Peer Review Opportunities, more Other Opportunities: I’m sure this won’t be popular, but it is possible we could also reduce volume by increasing the number of papers allowed at conferences somehow. Could we make conference participation entirely poster based, for example? This would work best if we remove peer reviewed papers entirely from conferences, so that there is no competition for those slots.

Traveling Reviewers: Lastly, we could encourage authors to only resubmit a paper with substantial revision and change tracking, by having reviewers “travel” with papers, at least within the same tier/group of conferences (maybe: UIST, DIS, CSCW, CHI, TOCHI, ASSETS, and other peer conferences). This should help to reduce paper volume and increase review consistency. It would require a process for addressing the sorts of harmful statements I mentioned above. However, that represents an improvement over the current situation where there is no process. For example, perhaps authors could request replacing specific reviewers.

Please comment! I’d love to hear more ideas for what we can do to improve things!

Fabrication Work at ASSETS 2020

I attended my second virtual conference in a week, ASSETS 2020. Once again, kudos to the organizers for pulling off a wonderful experience. It was very similar to UIST (discord+zoom), with some different choices for format — a slightly slower pace with more opportunities to take breaks. I’m not sure I have a strong preference there, but I was definitely more tired after the longer days.

One other significant difference was the lack of a video option in Discord — this choice was made for accessibility reasons, because interpreters would only be possible on zoom, and it was (somewhat) made up for by the many zoom social events. Still, I did miss the more unplanned nature of the UIST social events. I wonder if there’s a way to have the best of both worlds — spontaneity and accessibility.

There was far too much outstanding work at ASSETS for me to summarize it all, including lots of award-winning work by UW accessibility researchers (CREATE). However, in this post I want to sample a particular subset of ASSETS work: Fabrication work. I was excited to see more and more of this at ASSETS, ranging from bespoke projects such as this one-handed braille keyboard (video) to this innovative exploration of low-cost materials for making lock screens tangible which explored everything from cardboard to quinoa (video)!

One theme was making the fabrication process itself accessible to people with disabilities. For example, Lieb et al work on using haptics to allow 3D model mesh inspection by blind 3D modelers (video), while Race et al presented a workshop curriculum for nonvisual soldering (video).

Of course there was a range of papers exploring tactile graphics. For example, PantoGuide is a hand-mounted haptic display that presented meta data as the user explores (video). I particularly loved Gong et al’s study, which takes a nuanced approach to image understanding that values a variety of ways of understanding graphics:

A final theme I want to call out is in the space of physical computing, support for learning was a theme in TACTOPI (Abreu et al; video) and TIP-Toy (Barbareschi et al; video). TIP-Toy particularly interested me because of its support extended to allowing not only consumption of content but also authorship. On a completely different note, Kane et al.’s fascinating work on the ableist assumptions of embedded sensing systems was a best paper nomination.

While this quick tour by no means covers every relevant project, it does highlight the wide range of ASSETS work at the intersection of accessibility and fabrication. I look forward to seeing this area expand in years to come!

Supporting Diversity in SIGCHI

Being an ally means being uncomfortable.

—R.A.C.E. team, addressing institutional racism within initiatives for SIGCHI’s diversity and inclusion, from their blog post in Interactions Magazine blog

The R.A.C.E. team’s powerful blog post addressed material impacts of institutional racism. In support of them, I believe it is critical to tell stories even if they make both the teller and the reader uncomfortable. For this reason, I wrote an Interactions blog post detailing some of my own more negative interactions with the SIGCHI EC.

Why did it make me uncomfortable to tell this story? First, I personally know many members of the SIGCHI EC, and I know how much they care about accessibility, and how much hard work, and change, has already happened thanks to AccessSIGCHI‘s efforts. I worry that my blog post will make them think that these efforts have gone unseen.

Second, I was very much hurt and angered by my experience, and it also made me feel unsafe. Perhaps this worry is misplaced, but by bringing it all up again, and making it more public, it seems possible that folks will think I behaved unethically or even go further in prosecuting this accusation.

However, I believe that taking risks is how we make progress, and I deeply hope that my love for SIGCHI, and for the individual volunteers within and outside of the EC, will help carry the day and allow this challenging moment to create a positive coming together rather than a rift between SIGCHI and its constituent communities.

The Accessibility work undertaken by the EC is very very important. However it must be complemented by equally important work that addresses structural inequity. As I said in my blog post

When work is done by marginalized groups, such as the R.A.C.E. team and AccessSIGCHI, it is especially important to nurture and cultivate their perspectives. The cost of the commitment of individual time to these efforts should not be underestimated, especially given the likelihood that many such individuals are continually being asked to put extra time into representing their community as well as advocating for themselves. Even small blows to these efforts have the potential to eliminate a gift that could otherwise help our community to better itself.

A Challenging Response, Jen Mankoff, from my blog post in Interactions Magazine blog.

Launching UW CREATE!

Create logo (person with prosthetic arm holding a lightbulb) Today is the launch of the UW Center for Research and Education on Accessible Technology and Experiences (CREATE). I’m so excited to be part of this effort, which has representation from across campus. Microsoft has honored us as a founding partner and has been a huge driving force in making CREATE a reality.

There is no doubt in my mind that the time is now for launching an effort of this magnitude. Since CREATE’s  mission to increase representation and have real world impact on accessibility is especially important in a time when so much is in flux.

I also want to highlight that CREATE is not just a technology-centric center. It has a strong thread of critical disability studies running through it, and the importance of giving people with disabilities a voice, and the power to advocate for themselves, as well as ensuring that the work we do has a real world impact on the disability experience, should not be understated.

Here’s to CREATE-ing a better future by creating a more inclusive future.

How Action, Activism, and Advocacy Contribute to Communities

I have recently been reminded in multiple ways of the many ways that all of us contribute to making our communities better.

Communities are created in part through leadership’s actions and choices. Many of us have never received any formal leadership training, but I have been lucky to often encounter examples of leadership worth emulating. I want to say thank you to leaders who take a hard stand against something that is wrong, and pointing it out. However, it requires refusing to point fingers, or even taking joint responsibility for problems is an equally hard job that leaders have to do. I also want to appreciate the leaders whose actions show that they believe that people deserve the benefit of the doubt. That mistakes are an opportunity for growth and improvement rather than punishment. That if someone’s daily actions demonstrate their commitment to a community, this is a seed to be nurtured. Leadership is also expressed through values such as listening. Recently, I was reminded by a friend that the best way to overcome differences is to listen, and that common goals can unite us if we can put misunderstandings aside.

Of course properties are not unique to good leaders. They help to make a community better when all of us exercise them. But the test of a community isn’t just in its culture and approach to individuals. It is also about how it grapples with change. Change requires effort, not just from leaders, but also from a critical mass of people in a community, to be successful. And change can often lead to friction. Because of this it can be one of the biggest challenges that a community faces over time. And it is something that, I believe, benefits from a multi-faceted approach.

A commitment to change is often expressed by leadership. For example, consider the significant and ongoing leadership, effort and time that the SIGCHI Executive Committee has put towards many knotty accessibility problems, from publications to policy to professional events.

However, a commitment to change also depends on the actions and advocacy/education work of individuals within the community. For example, the AccessSIGCHI volunteer community puts hours into the on-the-ground work of generating reports, identifying gaps in policy and suggesting how to address them, and developing methods and documentation for addressing accessibility.

Lastly, a commitment to change may require the courage and outspoken action of activists. Activists may put their professional careers at risk when they raise their voices. Whether they work through protest, organizing, unionization, or other means, their courage helps to start conversations and create momentum for change.

Personally, I am most comfort in the space of concrete action, and to some extent advocacy. But what I have come to realize in recent times is that change rarely happens when only one of these three approaches is in play. Action, advocacy, and activism play off of each other and each helps the other do more. While activism can create momentum, advocacy can turn it into commitment and policy. While policy creates opportunities for change, action is required to implement those changes. While action moves change along, activism helps to tear down barriers that change inevitably bumps up against. For these reasons, I have done my best to support and encourage all of these types of action when I see them.

Not everyone is comfortable with activism, not everyone has time for action, and not everyone has the power or proclivity for advocacy. But it is so important that we each remember to value all of them even when they make us uncomfortable. And that we express gratitude and support to all of the people doing all three types of work. 

The Value of a Disability Identity

I’ve been reflecting a lot recently on what it means to identify as disabled.

Disability is a social construct in many ways, and the social model of disability argues that structural problems (and social expectations) are a root cause of disability. I would argue also that disability is an individual identity. A disability identity something that has helped me make sense of multiple complicated and difficult situations (but I believe it is relevant even in a simpler situation, disability is not by any means a synonym for difficult). It can provide guidance for things such as self-advocacy, education planning, and the use of assistive technologies.

For example, a disability identity might give someone a way to think about the school or work environment in terms of how it can better meet their needs. Accessible technology is part of the solution, but so are modified exam formats that provide an equal footing in measuring knowledge; or the ability to rest when needed (and to have access to quiet, restful spaces). These and other similar choices can have a big impact on inclusion. Yet we still cannot count on administrators remembering this, and people with disabilities and their allies face many small battles all the time to ensure equity along these fronts. When someone says (as I have heard recently) ‘people should go home to sleep’ or ‘we’ll just test this child using the same method as other children so we can see where they stand’ they are advocating for equality rather than equity, for measuring impairment rather than disability.

A disability identity can also suggest the need for political action. This can include volunteer work, protest, advocacy, and more. It gives people permission to go beyond the status quo, to not accept a situation that excludes them or takes away their control or impacts their safety. Instead, they are empowered to ask why this is happening, and how it can change.

A disability identity can also be a guide in personal action. For example, when I was going up for tenure, I sat down with as many potential letter writers as I could to talk about a very important concept in disability: Disclosure. About half of the people I talked to were surprised we were having a conversation about this because they knew and understood that it was neither legal (in many circumstances) nor appropriate (ever) to disclose my disability in any letter they wrote for me without my permission. About half were surprised that I brought the topic up, or even offended, because they had believed they would be helping me by writing about all that I had overcome on my way to tenure. To be clear, I asked all of them not to disclose, and that should always be the default, unless you have explicit permission to say something.

Relatedly, a disability identity highlights where and how we can improve smaller individual interactions by emphasizing the importance of respect and agency. As such, it suggests

  • The difference between being curious (an important way to understand the world) and questioning whether something is needed/laughing (even good-naturedly) about it (which can be invalidating)    
  • The value of checking in (asking how someone is doing, or if something is ok) rather than assuming (saying that “you seem fine today, that’s great”, for example) or avoiding (talking about someone rather than to them for example)    –
  • The importance of giving space. Sometimes it is better to let someone decide when to talk about things rather than pushing for information or constantly asking.   
  • The importance of trust. It is so important never to accuse someone of using their situation to get something they want. It is also important not to assume someone can’t do something just because they look a certain way or have a certain impairment.
  • The importance of acceptance . Letting someone navigate in their own way and not bombarding them with expectations and questions

A disability identity might also change how we approach a research project. In my class on accessibility this quarter, we have frequently asked the question: How would a disability identity change this project. The answer often lies in the questions we ask of a work. For example, we asked — How does this project increase the agency and control of the person it serves? Who does it include and exclude and in what ways? Were people with disabilities used in the project, or were they partners, or even leaders? Should they be authors of this paper? What happened to them after the project ended?

I want to highlight some differences between these questions and the ones immediately obvious from a social model perspective. That suggests questions such as: How does this work tear down structural barriers that they might be facing? Does this work question the status quo or hold it up? What is the context in which this work was done, and what happened after the project ended? These are also important questions, but they cover different ground.

What has fascinated me when talking about these issues with others is the level to which they can be confusing, confounding, confidence-chilling concepts for people without a disability. If you are uncertain what you can say to someone, or feel attacked when people ask for change, keep in mind that you might be missing important perspective, or that the work of educating others about disability might involve a broad brush that catches you up in it even if you are doing the right thing.

Finally, I’ll note that disability identity can also be empowering. If you have a disability, and have not thought of yourself in those terms, or considered those possibilities, it can be interesting to introspect about them. Ask yourself what a disability identity might give you. It does not need to define you, but it might still be part of you.

Contributing to SIGCHI Accessibility

The AccessSIGCHI community (a group of volunteers that are working together with SIGACCESS to identify and address accessibility concerns across SIGCHI) has put out it’s 2019 report. I’m not going to copy the whole thing over here, especially since it’s already up on Medium but I do want to call out some important things about it.

First, although the report is about AccessSIGCHI’s work, it’s also in a way about accessibility across SIGCHI, since that is the goal we are working toward. And as such, it is incredibly gratifying to see the number of people all across CHI also working to make SIGCHI accessible. There are too many to name here (but we tried to name at least those who took on official accessibility chair roles in the report).

Second, we are making progress– more and more conferences are appointing accessibility chairs, for example. And ACM is moving toward a more accessible publications format (HTML) and thinking about accessibility in the process.

At the same time, accessibility is challenging us all to rise to new levels. Lack of accessibility is analogous to an inequitable tax that some face and others do not. It can cause issues with physical safety, trigger health effects that are non-trivial to cope with, or simply bar someone from participating in their own research community, and all of these have happened to people I know in the last year.

Change often seems incremental, and can be conditioned on not only the knowledge and caring of an accessibility chair, but choices made as far back as selection of and negotiation with a venue and as far out of the control of leadership as a rude push, by a person in power, in line for food.

For these reasons, it is critical that we not only set up goals and guidelines, not only hire expertise, but also work every day to raise awareness, to give a voice to those in our community with disabilities, and to empower them.

Accessibility is a hot topic in CHI research right now. It was one of the top keywords among submissions to CHI 2018 for example. If you are doing accessibility research, which benefits your career, but not accessibility service work, which benefits the careers of people with disabilities, ask yourself if you should change this. If you already volunteer, thank you!We need more volunteers, and we also need more representation and inclusion of people with disabilities in SIGCHI!

While we should not expect people with disabilities to do the service work necessary to improve accessibility, we should empower them to do so. This means giving people with disabilities a chance to be represented among the leadership where they can help to make decisions, address structural inequities, and have power to go with their strong voices. We must cultivate leadership and provide opportunities for people with disabilities. And we should focus those opportunities where they will have the most impact.

Last, while volunteer efforts go a long way, accessibility work sometimes costs money. It makes a big difference when it is possible to hire an expert to review a website, assess legal requirements for site accessibility, or hire a firm to provide captioning services. Budgeting for accessibility from the get-go, or having voices in the room where budgeting decisions are being made, will help to shift the balance from accessibility constantly being a burden to it being a standard.

Accessibility is a wicked problem, as I’ve said before. Even with the best of intentions and a lot of hard work, it is easy to miss something or get it wrong. But if we continue to dialogue about it and work together, I do believe we can make SIGCHI even more accessible. Mistakes will happen, but with dialogue we can learn from them. By working together, we can record them so others can learn too. And in the process we will show all of SIGCHI that they are welcome and respected in our community.